Axonal Sensory Motor Polyneuropathy - ?
 

Good morning, everyone. I used to be on the old BrainTalk forum; well, I used to check in. Mrs. Doubtfire may remember me. I've had PN for about 12 to 15 years, and once the medication stabilized me, I didn't go back to the neurologist. I've just had a round of tests for brain, with most of them turning out fine, but still waiting on MRI. In addition, my new neurologist did another EMG and nerve conduction. His diagnosis is Axonal Sensory Motor Polyneuropathy. Can anyone tell me what this is, and its progression? I went to Bing, but didn't learn much. The doc is having me do blood work to ascertain the cause to slow progression. Does anyone know anything about this? Any advice is welcomed.

:winky:I have axonal sensory motor neuropathy, both large and small fiber. In my case it is hereditary, CMT, and it is progressive, as the nerves die back the muscles start to die as well and you develop increasing disability. For me the numbness is moving toward my hips, I cannot move my toes, and my feet and ankles are losing strength. It is a slow but inexorable process.

Susanne, I am so sorry to hear this. It sounds as though your progression is far worse than mine since you probably developed it early on. For now, my med--Gabapentin--is keeping it under control. I just wonder if the process, for me, will be slow as well. I have no ankle reflexes, and I'm having trouble knowing where my feet are since I'm sometimes unstable.

I have the same trouble knowing where where my feet are, it is very difficult to stand up when I have been sitting. I am also on gabapentin, it helps with the burning and zaps, but not the deep bone / muscle pain, I have MS Contin and oxycodone for that or I would be on the sofa all day. I function pretty well, walk with a cane, two if outdoors, but I get so tired by the evening.
I was about 46 when my symptoms started to really affect my life, I am 51 now. The past five years have been a series of setbacks and losses, but I am thankful that my children are nearly all grown, only one is 14, the rest are able to take care of themselves and they all help out. Anyone going though this with young children is suffering far more than me.
Gabapentin only helps with symptoms, it will not slow the disease process. If yours is hereditary, and your symptoms sound too familiar, nothing will do that. What blood tests are they planning to do? Are they doing any genetic testing?
Good luck!
Susanne

basically it means that you have axonal degeneration or damage to multiple sensory and motor nerves. the axon is the part of the nerve that carries the electrical signals. The velocity and amplitude of those signals are slower and less because the axons are damaged. over time the covering or insulation of those axons, the myelin sheath will also start to deteriorate as they are affected by the deterioration of the axons they cover.
I have the same diagnosis. My progression has been slow and steady over the past 12 years. presently i am numb above both knees and to a leeser degree in my hands and lower arms. i just had emg/ncs's on my feet, legs and lower back today and on my hands and arms 4 weeks ago. There will be no happy ending to this story for me. My cause was exposure to toxins.
Your progression sounds slow and steady also to this point.

What are/were the initial symptoms of Axonal Sensory Motor PM?

for me numbness in both big toes and foot pain.

I have senosrimotor axonal neuropathy - it has affected my ability to walk, a lot. My doctors are not really sure how much longer I will be able to keep walking. Currently my steps are only a couple of inches long, and many of the muscles in my legs and my glutes are very weak now. Also, I am very numb in the same areas. my first symptoms were foot drops and numbness. Mine is caused by my lupus.

A diagnosis like--
 

--"axonal sensorimotor polyneuropathy", is, as Echoes points out, more descriptive than anything else; it indicates that the initial deterioration is in the nerve fiber rather than the covering/insulating myelin sheath and that it affects sensory more than motor functions (but that it affects both).

Most of the time, this is a diagnosis made for insurance purposes, in that there is a code for it and billing for visits can occur.

It would be far more interesting and useful to get a diagnosis that would imply a CAUSE for the axonal deterioration, if one can be found, as that may have implications for treatment and improvement. Common causes of axonal neuropathy include diabetes, a number of anti-nuclear antibody autoimmune diseases, chemotherapy and other toxic exposure, gluten sensitivity . . .what kinds of other testing for cause have you had?

So you can have some resources, look at:

www.lizajane.com

http://www.questdiagnostics.com/test...ripheralNeurop

http://www.aafp.org/afp/1998/0215/p755.html

a little off topic so please forgive me

Glenn after a 12 year battle, and numerous lawyers telling me i could not get it done, i got a letter last week acknowledging finally the cause of my peripheral neuropathy from a federal government entity. The 168 pages of evidence i submitted might have finally opened their eyes.

That is good news, echoes--
 

--will it help in terms of getting any services/therapies prescribed and/or paid for?

hopefully. that is the next step.

Wow, thank you all so much. To answer your questions:

Susanne, no genetic testing (though my sister has PN). The blood tests they're doing are Antinuclear Antibodies, B12 and Folate, RPR, Throxine (T4), Triiodothyronine (T3), T3 Uptake, TSH, 3rd generation, and other testing: 042580, 001453, 225920. (I have no ideas what these tests are, but he did say he would do thyroid tests, so some of them are probably for thyroid.)

Echoes, I've had it for seven years, but diagnosed six years ago. The first year was horrid. I couldn't walk any longer than 5 to 10 minutes before I was in severe pain. I went to neuro after neuro after neuro. I finally ended up with Dr. Hopkins at Emory. He diagnosed small fiber, but apparently that's not what it is.

Koi13, the symptoms were horrible pain in feet, and worse when trying to walk. Also, shooting electric-type pains.

Raglet, I have Rheumatoid Arthritis (in remission right now). I can still walk relatively well, have trouble with dizziness (not sure if it's from the feet or not). Sometimes, I have vibration, while in bed for night, from my feet all the way up to my head. Is this common?

Glenn Taj and Echoes, thank you so much for the explanations and the links. I'll be checking them out soon. Do any of you have an idea what the prognosis is, if they can't find a cause? I am a very young 68, still working from home.

Oh yes, I don't know if this has anything to do with anything, but I have advanced deg. disc disease, cervical and lumbar too.

You may well be--
 

--"co-morbid"; that is, have symptoms that are contributed to by more than one condition.

It is often very hard to tease out the symptoms of spinal/nerve root problems from those of problems of peripheral nerves farther down the line--the symptoms can be exactly the same. All people with chronic neurological symptoms definitely need imaging--usually MRI with and without contrast--of suspected spinal problem areas to see if nerve or spinal cord compression is frankly evident.

Moreover, rheumatoid arthritis is definitely one of those autoimmune conditions that can result in neuropathy:

http://neuromuscular.wustl.edu/antib...max.html#rheum

There is something called the "double crush hypothesis" in which it is theorized that nerves already compromised by one condition that then become compressed in some manner produce symptoms greater than the sum of the parts would lead one to expect. This is often mentioned for diabetics with nerve damage who then get spinal or nerve root compression on top of it, and have very bad symptoms, but I suspect it happens fairly commonly in other situations as well (such as when chemotherapy patients--many chemo agents are notoriously neurotoxic--experience nerve compression).

If your sister has PN and isn't diabetic, that may be very significant. Mine was early onset with cluminess, an inability to run, skate, or jump since childhood, but no pain. I am extremely tall and large boned so very strong which compensated somewhat during my young adult years, raising a big family.

As other have mentioned, first PN symptoms began with numbness in toes which spread upwards, beginning in my 30's, along with balance problems, ankle weakness, and a tendency to trip on curbs, etc. I spent years attributing leg pain and weakness/fatigue to varicose veins, phlebitis, etc. before being sent to a neurologist by my podiatrist. I had developed a seriously infected callous without knowing it and the debridment and cleaning up was done without any anesthetic, I was that insensate. It was already pretty severe. Like Echoes, my numbness is above the kness now.

I would definitely pursue the question of a hereditary neuropathy with your doctor. My own belief is that a lot of idiopathic cases are actually hereditary.
Hope you get more info soon!

I was diagnosed mild to moderate chronic sensory distal axonal symmetric polyneuropathy with small fiber modalities. That long worded description was the exact writing in my doctor's report.

I don't think my symptoms are getting worse. Honestly though it is sometimes hard to tell with a sudden flare that crops up from no where. My flares effect hands and feet ( sometimes memory fog as well). Numbness in soles of feet, random cold feeling in feet and tingling in hands along with an occasional stab of pain now and then. Also, some odd sensations in the scalp which are now pretty rare but re-occur minimally with the flares.

Typically a few days later the flare subsides. Tingling in hands go away completely at times. The soles of my feet always have some numbness , but the max and mins between are significant in comparison. Sometimes I can barely feel numbness under my feet at all. It is so weird!

This condition is frustrating and scary. I just keep fighting through it hoping that I'm slowly improving or at least staying the same.

Thank you, Karstan, GlennJ and Susanne. I found the comorbid information really interesting, Glenn, since I have RA (in remission), deg. disc disease, as well as sensimotor polyneuropathy. Makes you wonder, doesn't it?

Susanne, I'm not sure about my sister's PN since she's usually pretty busy and we don't have much time to talk. Next time I email her, though, I'll ask what kind she has.

Karstan, sounds like you're at the beginning of PN. I've had it about seven years, and it started off with a bang for me. I couldn't walk any longer than five to ten minutes, without being in excruciating pain. That's what sent me to numerous neurologists trying to figure out what was wrong.

One more thing, I went off the statins since every time I tried to take them, I would have serious heat intolerance issues. I have heat intolerance anyway, but I had really bad issues while I was on the statins.

I really appreciate you all taking the time to weigh in on this for me!

Oh my, whatever you do, stay off the statins!
I was on Tricor for about three months, lost all sense of balance, fell three times trying to walk up to the high altar with my husband and son for my youngest's first communion, even with a cane.
My neurologist, who was new at that point and very careful about contradicting anything my PCP had prescribed said rather coyly "you might want to stop taking that".
I improved dramatically. In fact while I am weaker now, four years later, my balance has never gotten as bad as it was on the Tricor.
I believe statins and triglyceride meds are contraindicated in all PN cases, but for CMT'ers they are pure poison. Lots of info on statins on this forum.

I never took statins, but had fairly high cholesterol. I started taking one cayenne pepper pill with each meal about 2 years ago. You have to take it with the meal or you will be sorry. My levels dropped from over 200 to 135. Google search it sometime. I know it made a difference along with exercise and diet. They say it acts like a scrubber and helps remove it from the arteries. Natural solutions can be the best solution.

A cayenne pepper pill. Hmm, I think I'll try this. Does it affect GERDs? I have issues with that too.

Yes, Susanne, I've been off statins for several years. I have no idea what my cholesterol readings are now--they used to be really high. But, I've done pretty well without the statins. I was miserable on them.

Possibly..... I have GERDS as well. I think that was part of my PN problem because of taking Prilosec which is an acid blocker. I have stopped taking Prilosec for some time now. I changed my diet along with taking supplements and it has helped. Also, taking organic apple cider when I need to. Sometimes the pill can cause a little heartburn. Take it with a meal and you should be fine.

For those who have intolerance to nightshade foods/veggies, cayenne pepper may not agree with them, and actually make the burning worse.

Acute to Chronic
 

I have axonal motor neuropathy. Mine is a form of Guillan Barre Syndrome, and I came down with it suddenly in late December 2012 (my diagnosis was acute axonal motor neuropathy.) Mine is likely due to a virus, but it could be autoimmune. Now I am in a chronic stage. My numbness and pain is getting progressively worse. My emg from May shows that my damage has progressed since it was done in the hospital. The damage has also moved into my muscles in the lower legs. I am going to have 5 IVIG infusions for 5 days in a row and then 2 per month until I get better. My insurance company has denied my treatments 3 times but I am getting better signals on this appeal. I'm hoping that the IVIG will improve my situation.

I have axonal sensorimotor
 

polyneuropathy. It has just been sensory neuropathy involving the sural nerves for the last 10 years, but apparently sometime this past year it is involving motor nerves on my left foot, my last EMG/NCV was in May. I expect the right foot will follow suit. I hate the fact that it is idiopathic. To me at this point that is the worst thing, since there is no one thing that points to the cause, I feel pretty helpless. :(